I debated about posting this. I'm skeptical by nature and when I heard about coconut oil at a caregiver's meeting and then saw this thread a week later I thought I would check the net for any information I could find myself. What I did find was that coconut oil in the past has been promoted as an almost universal cure-all. It's been an antiseptic, a hair conditioner and restorer, a skin cream, a cure or therapy for diabetes, heart conditions, cancer, epilepsy, and now various neurological diseases and dementias. My internet search was pretty hit or miss, whenever I could find time so I'm sure I probably checked out a very small amount of info out there. So if you'd all like to call me a wet blanket feel free. Dr. Bruce Fife (naturopath) used to be employed by the Fiji Coconut Board but now has a web site called the Coconut Research Council. He's written at least six books, with titles such as Coconut Oil Miracle, Coconut Cures and How to Prevent and Reverse Dementia, Parkinson's, ALS, MS, Huntington's Disease, Epilepsy, Stroke and Diabetes. Words like miracle and wonder food always make my antennae go up. These are for sale there and also on Amazon. Dr. Joseph Mercola (osteopath) has a site that sells supplements and "medical foods". He has already received 3 warning letters from the FDA about claims made for some of these supplements. I completely understand Dr. Mary Newport's desire to help her husband so I won't say anything except that her story sounds a little anecdotal (doesn't everyone hate that word). I also checked the Alzheimer's Association site. They have a list of alternative treatments that they DO NOT endorse. Coconut oil is on the list. I noticed several posters to this thread mentioned that their husbands gained weight after taking the oil. As my husband is pretty sedentary--uses a walker-- and has LBD ,a heart condition, diabetes and had a small stroke last year he doesn't need to gain weight. So I won't be getting him coconut oil which I have seen described as being denser than Crisco. After all this I have a question. Does the LBDA have a medical adviser who could perhaps give us a little guidance on this matter?Ann

Sat Feb 25, 2012 3:19 pm

labeckett

Joined: Thu Apr 21, 2011 9:07 pmPosts: 248

Re: Coconut Oil

Hi Ann,I am not a clinician but I'm a medical statistician by training, a professor, division chief and vice chair in a medical school, and with many years of experience in assessing evidence for clinical efficacy in scientific research. That is my profession, and I'm good at it.

Short answer, after some moderate but not exhaustive efforts at literature review using the standard sources (Pub Med, Cochran review of clinical trials): no scientific evidence that I could find supports the claims made here.

The science part of my comment: My standards for convincing evidence for therapeutic effects are pretty high: double-blind, randomized clinical trials, conducted, analyzed and reported in responsible fashion. I have not found any references to any such studies in the medical literature for coconut oil in geriatric patients with cognitive outcome measures. For what it's worth, I found two studies involving coconut oil and cognitive performance that may hae some slight relevance. In both cases, it was used as a "placebo control" for fish oil. One study was a short-term performance-enhancement study in college students, which showed essentially no effect/ improvement for either fish oil or coconut oil. The other was in geriatric rats, exposed to mercury; fish oil was slightly protective, coconut oil not so much, but differences were barely larger than chance alone.

The non-science part: Generally when I see something like this, I remind myself of Deep Throat's advice to the Watergate reporters, back in the Nixon era: "Follow the money!" Or, to take it back a couple thousand years farther, "Cui bono?" I don't know who is making money off this particular rumor but I bet that someone is! Coconut oil was much more widely used in food prior to the "no trans fat" movement, so sales may have dropped off. (Maybe the oil got diverted into cosmetics, or other markets besides the US, I don't know.) Anyway I have not tried to sort out the financial implications of this rumor, but I'm not running out and stocking up on coconut oilâ¦

Thanks, Laurel for taking the trouble to check some medical websites. You have confirmed, for me at least, that this may be indeed a "follow the money" story.Ann

Sun Feb 26, 2012 4:32 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Coconut Oil

Quote:

"Follow the money!"

I'm afraid you've got that nailed, Laurel! There is usually some vested interest in these miracle cures.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

The question posted to the pharmacist was:Is Coconut Oil Effective for Alzheimer Disease?

The answer concludes:"Currently, neither coconut oil nor Axona can be recommended for AD due to lack of credible effectiveness research. For patients or family members who insist on these products, suggest starting with a low dose and gradually increasing the dose to avoid adverse gastrointestinal effects. Healthcare providers should monitor for adverse effects and effectiveness and possibly increased lipid levels."

Sat Jun 02, 2012 4:45 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Coconut Oil

Thanks for sharing that, Robin.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Yes, I thought it was worthwhile. I wish there was a similar "Ask the LBD Expert" webpage!

Sat Jun 02, 2012 9:03 pm

benhaskell

Joined: Sat Aug 23, 2008 4:54 amPosts: 27Location: Newport, OR

Re: Coconut Oil

It's been almost four years since I've posted to this list. I wanted to have fun (that means gardening) for the first two years after Dad died, since his LBD took about a year out of my life. During those two years, I continued to research coconut (and MCT oils) but on a lower key. Then about two years ago I got arthritis, and have been researching herbal approaches to arthritis. During this time, I have been systematically collecting research papers on other aspects of herbalism, such as for Parkinson's. In the last two years, I'm still collecting papers on fatty acids, but I'm not really reading them.

This post will concentrate on what I have learned since then. My second post will reply to Beachdaisy and labeckett

Since I stopped posting, my low key efforts from 4-2 years ago have been focused on:

1) Which is better: MCT or Coconut oils, in regards to generating ketone bodies?

I focused on two sub questions related to #1.

1A. I studied issues related to Fatty Acid Transport from the gut into cells: This involves:

1A1. "Fatty Acid Transporters" (these are membrane bound proteins which import fatty acids from the digestive tract into the body, and from the blood (and lymph) into cells1A2. "Lipoproteins" (these are "sponges" which carry fats, phospholipids, fatty acids, and cholesterol in the blood and lymph [the lipoprotein complex "HDL" is sometimes called 'good cholesterol' and the lipoprotein complex "LDL" is sometimes called 'bad cholesterol).1A3. "Fatty Acid Binding Proteins" (these are "sponges" which store and transport fatty acids inside cells [while "Lipoproteins" are outside cells]).1A4. "Carnitine" and "Fatty Acid Carnitine Transporters" (which transport fatty acids from the cytoplasm of the cell, into the mitochondria, where they are burned for energy).

Why bother with 1A? Because there are some claims in the MCT literature that the Fatty Acids in MCT Oils can bypass the normal fatty acid transport pathways. Why is this important? Because many people with LBD have eating problems (dysphagia) and are beginning to starve; the regulation of general health is beginning to fail, and this implies that the normal fatty acid transport pathways are likely to fail.

I wanted to know: If MCT fatty acids can bypass normal transport, is this also true for Coconut Oil (especially for "Lauric Acid", which makes up about 50% Coconut Oil). After two years, I still don't know to what degree Lauric Acid bypasses normal transport My impression is that Coconut Oil may have greater dependence on Carnitine than does MCT Oil. It may be wise to supplement Coconut Oil with Carnitine (widely available at health stores).

1B. To what degree do MCT or Coconut Fatty Acids generate ketone bodies in the endothelial cells which line the inside of the gut?

When I was posting four years ago, the theory was that MCT and Coconut fatty acids were transported into the Liver, and therein converted into "Ketone Bodies". I since learned that a large fraction of MCT fatty acids are converted into Ketone Bodies by endothelial cells before they even have a chance to visit the Liver. From memory (I need to recheck this), this is somewhat true for Lauric Acid (coconut oil) as well.

So what does this have to do with LBD? If the liver is beginning to fail in LBD, then there is an alternative route to ketone bodies that bypasses the Liver. On the other hand, I have read that Parkinson's may start in the neurons of the Gut. If this effects the endothelial source of ketone bodies, then one must fall back on the Liver.

2. Which is better: MCT or Coconut oils, in regards to direct transport into the brain?

Can the brain use MCT fatty acids or Lauric Acid, directly, without any need for conversion into ketone bodies by the liver or gut?

Feeding the LBD brain via ketone bodies requires "flooding" the gut and/or liver with high doses of MCT/Coconut oils. Direct transport into the brain implies that moderate doses could be used because there is less dependence on ketone bodies. The Axona clinical trials (as of two years ago) were always faulty in that the dosages were never high enough to really "flood", and therefore the elevation in ketone bodies was always rather modest. Therefore, the scientific evidence from the clinical trials of Axona were always very weak.

There was some research which shows that "octanoic acid" (aka "caprylic acid" one of the MCT fatty acids) is directly transported into the brain as measured non-invasively by MRI. Rates of transport were sufficiently high that the metabolic fate of Capryic Acid could be followed. I could not determine how the transport rate of caprylic acid into the brain compares with that of glucose (the normal energy source). I could not determine if the transport rate of Caprylic Acid into the brain becomes faster if people are adapted to diets rich in MCT or Coconut Oils.

There was some research into the transport rates into the brain of fatty acids from "conventional" fats or oils (Palmitic, Stearic, Oleic, Linoleic & others). I could not determine how the rates of normal fatty acids compare with Caprylic Acid or with Glucose. I don't think that I could find info on transport rates for Lauric Acid, so a direct feeding of the brain by Coconut Fatty Acids can't be predicted.

3. Is there a "Dark Side to the Force" for MCT or Coconut Oils?

3A. In other words, is it really true that "Saturated Fats Are Evil!"?

From a cardiovascular viewpoint, my conclusion is that excess saturated fats are generally safer than excess Carbs. This is controversial, in that nutritional scientists are divided into opposing camps. It is my impression that I fall into the minority camp. My position in regards to relative safety only applies to "Fast Carbs", meaning those with a high "Glycemic Index".

It is my opinion that old (1960-1970s) animal studies into coconut oil, which suggested that coconut oil may be bad from a cardio vascular viewpoint, may have two flaws. First, it may not be that an excess of coconut oil was a problem, but that coconut oil may have replaced oils rich in Omega-3s. Second, the animal models may have used inappropriate species that don't model humans very well. I don't recall if I actually read this old literature, or if got it second hand.

However, I am not yet satisfied in my depth of research into Coconut Oil from a cardio vascular viewpoint. The question remains open.

My opinion is that your LBD loved one is going to die within a few months or years. If Coconut Oil helps your loved one "to be there", instead of "to be absent", who cares if it shortens life by 1 week. That is probably a worst case scenario, it probably takes decades for a faulty diet to clog up the arteries; I don't think that a few months or years on coconut oil matters. My stated position assumes a patient without any known vascular issues; I would be much more cautious with a person suffering from known and current cardiovascular issues.

While I still worry about a cardiovascular dark side for Coconut Oil, I don't worry much in regards to MCT oil.

3B. Reactive Oxygen Species ("ROS").

The supplement industry hypes "Antioxidants" to deal with the supposed dangers of "ROS". So I am now discussing the "Antioxidant Thing".

In an ideal situation, all of the fatty acids are going to be processed by mitochondria. However, some of them will diverted into peroxisomes, where production of hydrogen peroxide (a type of "ROS') will result. As to Coconut Vs MCT, my impression is that MCT fatty acids undergo less peroxisomal processing than Coconut Fatty acids, so in that aspect, MCT may be safer. However, I am still unsatisfied as to my research into the peroxisome issue.

Conventional oils also result in the production of "Lipid-Peroxides", which then yield "Aldehydes" (still another type of "ROS" ). Carbs also yield aldehydes. So in terms of ROS, choose your poison, Carbs or Oils, I don't really know for sure which is safer. In terms of aldehyde production, either Coconut or MCT oils are safer than "conventional" fats or oils. You can't avoid aldehyde production entirely, you need to eat some conventional oils and fats for their essential fatty acids.

4. Digestive Tract Irritation: Coconut Vs MCT

When I tried to develop recipes for Dad, I would test them on myself first. My recollection is that recipes with MCT oil slightly irritated my stomach, while replacing MCT by Coconut Oil did not irritate me. I wanted to develop mixtures of MCT + Coconut Oil + Conventional Oil (eg palm, tallow) that would reduce irritation, but Dad died too early.

5. Recipes: Coconut Vs MCT

It was easier to develop recipes for Coconut Oil than for MCT oil. Coconut Oil yielded more solid foods, while MCT oil usually had an oily phase within the solid food matrix. This problem is probably solvable, as "Axona" is in a solid form, and other solid MCT products are available. Its just that I personally couldn't solve it independently from scratch .

That is all for now.

Tue Feb 26, 2013 8:33 am

SarahT

Joined: Sat Mar 15, 2014 10:54 amPosts: 6

Re: Coconut Oil

I'm new to this site and this is my first posting. My mom was diagnosed with LBD on Jan. 29, following what we all thought was either a stroke or a reaction to Phenergan. A good friend told me his grandmother had LBD and his mom treated her with coconut oil and it reversed her symptoms. She died in her late nineties and I don't know how far along she was or how much her symptoms were reversed, but at this point why not try it? I bought a jar of the oil a week ago and am going to try it on my mom, who is still in the early stages with slight dementia, when I visit next week. I am also going to try Ginkgo Biloba, which has proven as effective as some Alzheimer's in tests reported by the highly reputable Cleveland Clinic. I am hoping the combination of these two has an effect. In response to the "follow the money" argument, Dr. Fife and some others seem to have jumped on Dr. Newport's bandwagon to make a profit, but Dr. Newport is as sincere and altruistic as it comes. She responded to my email within 2 days, as busy as she is. To the "anecdotal" argument, using lime juice to treat scurvy was once anecdotal, until after 200 (estimated) years it was found that Vitamin C prevented scurvy.Also, apparently there has been enough anecdotal evidence to justify a study by the Byrd Institute in South Florida. The ketone theory also is being tested by Dr. Veech of the NIH. Let's all hope Dr. Newport is right.

Thu Apr 03, 2014 1:52 pm

gailabbi

Joined: Sat May 25, 2013 3:53 pmPosts: 330

Re: Coconut Oil

Welcome to the forum Sarah but sorry to hear that your Mom is dealing with LBD. We would all be very interested to know if your Mom finds any improvement with the coconut oil so please keep us posted. I would suggest that you make sure your Mom's doctor knows about all the herbal remedies you're using so that the doctor is aware of all meds - pharmaceutical or herbal. Please do keep us posted on your results!

_________________Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Thu Apr 10, 2014 12:58 am

SarahT

Joined: Sat Mar 15, 2014 10:54 amPosts: 6

Re: Coconut Oil

Hi Gail and thank you for your welcome. I'm also very sorry to hear about your mom. I see it was 4 years ago, but I lost my dad 25 years ago and it still makes me sad.

I will definitely post updates on my mom's condition and her response to the coconut oil. I have a strong feeling her neurologist will not want her on the coconut oil because there have been no completed studies. The way I look at it, we don't have time to wait for the results of the study, and it doesn't do any harm if you use it properly and take precautions.

Thu Apr 10, 2014 8:30 am

SarahT

Joined: Sat Mar 15, 2014 10:54 amPosts: 6

Re: Coconut Oil

Gail (and anyone else following this thread...it has certainly diminished in popularity). I was very gung-ho in introducing my mom to coconut oil and MCT oil when I went to visit over Easter. Actually, it was the only thing preventing me from falling into despair. She was game for 2 weeks or so which surprised the hell out of me - maybe she was doing it to make me feel good. But ultimately, her skepticism won out - and her extreme nausea. Levandopa is causing her severe stomach pain and the coconut oil made it worse and made her "disgusted." As a former nurse, she is also skeptical of taking something that hasn't had any proper clinical testing. The Byrd Institute at the U of Fla is conducting a trial of a coconut based remedy called "Fuel for Thought" and I'm waiting to see how that goes. Hopefully it works and doesn't cause nausea or taste awful. I think there's something to the science but it has to be palatable.

Sun Jun 15, 2014 2:04 pm

gailabbi

Joined: Sat May 25, 2013 3:53 pmPosts: 330

Re: Coconut Oil

I guess one thing to keep in mind is that coconut oil is 92% saturated fat so you don't want to eat too much of it...

_________________Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

You cannot post new topics in this forumYou cannot reply to topics in this forumYou cannot edit your posts in this forumYou cannot delete your posts in this forumYou cannot post attachments in this forum